Having a premature baby – what’s it really like?

My Family, Our Needs’ Editor Emma, whose daughter was born at 25 weeks, shares her experience of having a premature baby and offers advice to others in a similar position.

There’s a big focus on premature babies in the media at the moment. On 26th October, Croydon North MP Steve Reed introduced his bill to extend parental leave for families affected by premature birth. The bill has received cross-party support and the campaign has gone from strength to strength on social media. The bill will go for a second reading on December 16th 2016 and, if successful, will go before a committee in the new year.

November also marks World Prematurity Day, a movement set up to raise awareness of having a premature baby and the impact it has on families. This year, the charity Bliss is focusing on the need for family-centred care for all premature babies. You can read its latest report about how the lack of widespread support for families is impacting care for babies here.

Totally unprepared

I went for my routine midwife appointment at the end of July 2011. It was one of the hottest summers we’ve ever had and in the days leading up to my appointment, I’d put my lack of ankles and slightly swollen legs down to the weather. My midwife did the standard wee test and it came back high in protein. So high, in fact, that she said that couldn’t be right and she’d just do another one. The second one gave the same result and the expression on her face changed pretty quickly. I was told to go straight to the hospital, perfectly well enough to drive myself, and I remember calling my partner and telling him it was probably just all a fuss over nothing.

I stayed in overnight to be monitored and the next day I was transferred to Luton and Dunstable hospital. The conversation with my doctor beforehand went a bit like this:

Doctor: ‘You’re going to be transferred to a different hospital now, one that takes babies from 25 weeks.’

Me: ‘You mean one that takes pregnant women who are 25 weeks?’

Doctor: ‘No, you’re going to be having your baby soon and this hospital doesn’t care for babies who are under 30 weeks.’

Me: ‘Oh. When do I have to go?’

Doctor: ‘Now. There’s an ambulance downstairs waiting for you.’

And that was that, off I went. The confusion of everything that had led to that point followed
me around like a fog for a long time afterwards. My daughter was born just over a week after I was admitted to hospital, weighing 540g. Or 1lb 1oz if you’re old school. She came home on oxygen when she was 6 months old, after lots of complications and a jolly Christmas stay at Great Ormond Street Hospital.

Everybody’s experiences are so different, but here are some things I wish I had known at the time which I hope can help other parents.

Talk about it if you can, but don’t feel bad if you can’t

Everybody has their own way of coping, but when something as traumatic as this happens, sometimes it’s not about coping, it’s about surviving. Getting through.

My partner found it helped to talk to people: family members, friends and colleagues. If we were in a situation where someone asked us how our baby was doing, it became a given that he would do all the talking.

I found it especially hard to talk to the other parents on the Neonatal Intensive Care Unit (NICU) ward. Maybe there was something inside me that didn’t want to be in the same boat as them and stopped me connecting with them and sharing our experiences. It was almost as if I didn’t want to accept that this was happening to us.

I do wish I had written my thoughts down, though. Even now, I still struggle to talk about everything that happened and maybe if I had got some things down on paper, I’d feel like I had processed my feelings a bit better. Buy a big pad and write your feelings down, from the good and the bad to the ugly. No-one else has to see it.

Get help

The corridors of NICU are packed with leaflets and booklets for a reason. Parents need help. We bypassed them in the first few weeks, but eventually we started to read them because, honestly, there’s not much else to do when your baby is lying next to you in their incubator.

There was emotional advice about counselling, financial advice, benefits advice and all sorts of information about what the future may hold. Some of it was too hard to take in, but the practical advice was invaluable and I wish that I had been more pro-active with it.

First cuddle excitement

Research by Bliss in 2013, showed that 1,800 parents who spoke to the charity said they were spending £282 extra every week. Our baby stayed in hospital for 24 weeks which means we would have spent £6,768. Loss of earnings, car park charges, late-night food stop-offs when there’s no time to even think about cooking…It all adds up. But parents don’t question it because there are bigger things to worry about at the time. Looking after yourself is so important and something I wish I had realised back then.

Be honest with your employer

My daughter came home 6 months into my maternity leave, which meant we would only have 3 months together at home if I went back to work, as originally planned, at 9 months.

There was no doubt in my mind that I couldn’t go back to work, she was on oxygen full-time and had numerous hospital appointments and check-ups. Even the most sympathetic of employers, and mine was lovely about it, would struggle to find a work pattern which fitted around my baby’s busy schedule.

Appointments lessened as she made progress, but there was still a lot going on and I decided it was easier for me to work for myself than worry about being a burden to an employer. A more flexible approach to work would have, without a doubt, helped me get back into the workplace.

Do what’s best for you

Each NICU may have different policies but for us, the only extended family that could visit was grandparents and these visiting hours were set times. Sometimes it was lovely to see family and have them visit the unit. Other times it wasn’t.

I didn’t have the strength to talk about what I needed and if peace and quiet is what you need to get through that week, don’t be afraid to tell people. They will understand.

Sometimes, the last thing I wanted to do was make small talk with people or listen to them trying to keep me positive. The same goes for when you take your baby home. Having a premature baby is a very public experience and for parents who get to take their baby home from hospital when they are born early, private time as a family is essential. Except when your Mum drops off a shepherd’s pie at 8pm because she knows you’re too tired to cook. Then you will hug her tight and be eternally grateful.

Changed our lives – for the better

It may sound all doom and gloom but having a premature baby has changed my life for the better, just as it does for those parents who have a full-term baby.

When we were at our daughter’s first parents’ evening recently, I could feel my partner’s eyes slightly glazing about the same time as mine did, when her teacher was telling us that she’s not the best sharer in the world. We can teach her that, we both thought, we can get her to be better at that. But, she’s here. She’s alive and she’s part of our family (she IS our family).The rest all blurs into insignificance sometimes. I know not all parents get to take their preemie home and, for that, I feel lucky every day.

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